Our daughter, Beibhínn Hegarty Devine, fell asleep to mitochondrial disease in January 2019. Since then we have seen that there is little awareness of this condition in Ireland both north and south so taking inspiration from the Charlie Gard family and foundation, my partner and I have decided to try and raise awareness and funds via sports teams and other local support here in Ireland.

This is just the start of our campaign and we will work together with the Charlie Gard Foundation to create as much awareness and funds as we can in Ireland, all in Beibhínns memory.

Mitochondrial diseases are life limiting, there is currently no cure and there are very few treatments available for those affected by mito. Please help us as we begin to raise funds for research and raise awareness for this truly devastating disease. More children die of mitochondrial diseases than survive, and this must change.